By Serenity Kitty
Rare Disease Day is coming up soon and the Community Virtual Library on the Cookie sim is holding a special event to highlight some of the people living with a rare disease.
Having a rare disease myself, this event is close to my heart.
The event organizer, Pi Illios, has invited me to the event to speak about my disease, the effects the disease has had on my life, and my 15-year journey from symptom intensification to diagnosis.
Celebrated worldwide, Rare Disease Day is held on the last day of February, which allows for this day to fall on the rarest day of the year every four years, leap day. In 2023, as this year isn’t a leap year, the worldwide event will occur on February 28th.
The purpose of Rare Disease Day is to raise awareness for rare diseases and to advocate for equity in social, healthcare, and diagnosis opportunities for persons affected by rare diseases.
In the United States, rare disease (commonly referred to as orphan disease) is classified as having less than 200,000 Americans affected by it. Some rare diseases affect less than 100 people. As orphan diseases are typically overlooked by pharmaceutical companies, very little research is usually done to formulate treatment options.
Globally, there are over 7,000 rare diseases, with more than 300 million people being affected by one or more rare diseases. In the US, more than 25 million Americans are currently living with a rare disease.
Community Virtual Library’s Rare Disease Day event will be held on Thursday, February 23rd at 12pm SLT.
http://maps.secondlife.com/secondlife/Cookie/35/62/21
Serenity
Rare Disease Day is coming up soon and the Community Virtual Library on the Cookie sim is holding a special event to highlight some of the people living with a rare disease.
Having a rare disease myself, this event is close to my heart.
The event organizer, Pi Illios, has invited me to the event to speak about my disease, the effects the disease has had on my life, and my 15-year journey from symptom intensification to diagnosis.
Celebrated worldwide, Rare Disease Day is held on the last day of February, which allows for this day to fall on the rarest day of the year every four years, leap day. In 2023, as this year isn’t a leap year, the worldwide event will occur on February 28th.
The purpose of Rare Disease Day is to raise awareness for rare diseases and to advocate for equity in social, healthcare, and diagnosis opportunities for persons affected by rare diseases.
In the United States, rare disease (commonly referred to as orphan disease) is classified as having less than 200,000 Americans affected by it. Some rare diseases affect less than 100 people. As orphan diseases are typically overlooked by pharmaceutical companies, very little research is usually done to formulate treatment options.
Globally, there are over 7,000 rare diseases, with more than 300 million people being affected by one or more rare diseases. In the US, more than 25 million Americans are currently living with a rare disease.
Community Virtual Library’s Rare Disease Day event will be held on Thursday, February 23rd at 12pm SLT.
http://maps.secondlife.com/secondlife/Cookie/35/62/21
Serenity
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